First of all (((((HUGS to you Infoforme))))) be sure you ask your doctor every question you have. If you don't understand the answer, ask again. Have your questions written down and have him/her help fill in the answers on your paper. If you aren't comfortable with your doctor, get a new one. If you haven't gotten a second opinion, I highly suggest that. Matter of fact, with CINIII, I highly suggest you seek the opinion of a gynecological oncologist.
When are you scheduled for your hysterectomy? How will your doctor do the surgery? what does he/she plan to take during the surgery?
If you don't know, call the office and find out.
Next, it sounds like you have CINIII which is the highest level of precancerous cells. Some people say adnocarcinoma in situ (also called AIS) is the highest level of precancer, others say it is the lowest level of cancer (Stage 0). Sometimes treatment for CINIII/AIS a cone biopsy (or LEEP). Sometimes that doesn't get all of the leisions/atypical cells and the doctor will then do a hysterectomy.
I'm going to quit talking in generals and will just share my story, because it is similar to yours. I apologize now for the length. I tried to break thins up into shorter paragraphs for easier reading.
I am 44, married, never had children (partially by choice, partially by chance). I've ALWAYS had good pap smears.
In December, my doctor did my Pap and did the HPV/DNA test for the first time. Pap came back good, as usual. HPV/DNA came back as positive for high risk HPV. Normally, the doctor waits and rechecks HPV test in 3-6 months. Since hubby and I totally freaked out, the doctor said I should go ahead and go to a gynocologist for a colposcopy and biopsy with a possible ECC (endocervical curettage).
The colposcopy "looked so good" the doctor didn't need to take any biopsies of the exocervix (quotations are the doctor's words). "Just to check" she decided to do the ECC. It scrapes the endocervical canal to check for atypical cells which can't be seen by the colposcope. (think donut or bagel: exocervix is the frosting on a frosted donut; endocervix in the inside of a tiny donut hole, beyond where you can see from the surface).
The ECC came back as "atypical glandular epithelial lesions" and adenocarcinoma in situ (AIS). That means my precancerous cells were glandular, not squamous. Something like like 80% of all abnormal paps show squamous cells. Only 20% show epithelial cells. Epithelial cells are columnar (like a column) and the secrete mucous. Atypical cells are more difficult to see/find/treat. They also grow faster than squamous cells. AND they grow more irratically (my words, not any doctor's description). They "skip" from one lesion across good cells to another location. They do not grow adjacent to other lesions.
Anyway, I was diagnosed with Atypical Glandular cells and AIS. A few weeks later, I had my first cold knife cone biopsy. Some doctors do a LEEP or cryotherapy to take this sample. Other doctors do the cold knife cone (like my doctor did) because it preserves the edges of the tissue sample to see if there are "clear margins", margins without atypical growth at the edge of the sample. LEEP singes the edges so they aren't as easy to read. Well, my cone showed one lesion: 1.6mm across x 1mm deep. This is the thickness of a wooden pencil's lead! My margin was clear, but barely. That lesion gave me the diagnosis of adenocarcinoma Ia1 (cervical cancer, early stage). She sent my records and me to a gyneoclogical oncologist.
The gyn/onco said I was going to have a hysterectomy one way or the other. We just had some choices (and a little bit of time) to decide how to do it.
1- radical hysterectomy to remove cervix, uterus, ovaries, tubes, and the fatty tissue in the abdomen (that is part of the reproductive organs - not my fat tummy!
). Any time in the next 6 months. Preferably sooner than later.
2- Cone biopsy on a Tuesday, hysterectomy the next day (hyst had to happen within 48 hours after the cone, or there would be too much swelling to get in there - or we'd have to wait 6 weeks! NOPE!). Some time in the next 6 months.
3- Wait 3 months (to heal from the cone), do another ECC. If the ECC was ok, then do the hysterectomy. If the ECC came back with abnormal cells, do another cone, then the hyst. At the end of the 3 months, up to about 6 months.
My doctor said she'd pick option 3 because it had the possibility of fewer sedations. *I* picked option 2 because if I was going to have the hyst any way, I wanted to do it during my summer vacation (I'm a teacher) and be recovered than to wait. Kind of a get-it-over-with mind set.
I made my decision about surgery back in April, and book the surgery for June.
Well. That's what we did. I had my second cone biopsy on Tuesday the 17th and the hyst on Wed the 18th. I returned home on the 20th. I'm sore, but SOOOO glad the cancer is gone! (I don't have the final pathology report, but this is my gut feeling based on some things the doctor said about how the biopsy went <crossing fingers and saying prayers>).
It took me a while to understand how/why they needed to do the second cone if they were going to do the hyst anyway. I think I understand it, now. The second cone determines if there are more cells and how deep they are. This tells the doctor if he/she can do a simple hyst (uterus and cervix) or if he/she needs to do a radical. If any lesions are found and they are less than 1mm deep, then the simple hyst is done. If the lesion is larger than that, then the radical is appropriate.
I know this is INCREDIBLY long, but I hope it helps you. Please feel free to ask any quesitons you can think of. Also, you might check the Cervical Cancer board here at healthboards.com. There are so many helpful threads and women over there.
I know you are afraid. I know, personally, the more information I have the calmer I am. So I wish you peace and understanding.